On February 18th, 2011, our lives were changed forever when our son Christian Taylor Buchanan entered the world. He was born with a bilateral cleft palate and lip and almost completely blind. This blog is the story of his life, the joys we share, the challenges we encounter, and the amazing and trying journey ahead of our family!

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Christian Taylor Buchanan

Tuesday, September 25, 2012

Ohio, Nationwide Children's Hospital, and Shriner's

For those of you who have been following our story for some time, you are probably very familiar with my distaste for children's Hospital; and for those of you who are not, you can go back down this blog a little ways and read some of the horror stories about our experiences there.

I was convinced back last year sometime that I could not take Christian back there, at least not to the plastic surgery department, and I'll explain that in a minute. We still see gastroenterology there, because hey, how can you mess up replacing a Mic-Key button? We still see the Neonatal Follow-up Clinic because they are really nice, knowledgeable, and willing to help get Christian services when he needs them. But as far as plastic surgery goes - No way, Jose'! You can't make me take him back, I won't do, I refuse, NUH-UH! So let me explain why.

Back last year when Christian was about 4 months old, we visited plastics for a follow up to a CT Scan. The scan was just to double check a surgery closure from his surgery the previous month and ensure that it wasn't infected under the skin next to his absent skull (I don't think I even have to explain why that sounds dangerous). So when we went to the doctor to hear the results of the CT, the doctor begins to tell me that Christian has Craniosynotosis, a fairly rare birth defect that has NOTHING to do with his very rare cleft (red flag number 1- what are the chances he has two totally unrelated and very rare birth defects? Should I be playing the lottery?) and that we needed to do surgery or his head would begin to grow funny (red flag number 2 - shouldn't his head be growing funny now if he already has it?) AND we had to do the surgery in the next three months or Christian would have brain damage (red flag number 3 - so in the next 3 months he's going to go from a perfectly cognitively functioning infant to brain damaged?). He then begin to explain that the procedure to correct this included cutting open Christian's skull from ear to ear, moving the skull to where it should be, and reattaching it with metal screws and wires, some of which he would have for the rest of his life. A neurosurgeon would be joining in the operation because this was a neurosurgery (red flag number 4 - shouldn't we have a neurosurgeon look at Christian before we actually do the surgery?). He said we would wait a few more months and check it again, because he wasn't completely sure. So we went back 2 or 3 months later. The doctor walked him, pulled up the old CT scans from a few months ago, gave them a 20 second look over, walked over to Christian and ran his hands over Christian's head for about 10 seconds and said "Yeah, he definitely has craniosynotosis. He needs the surgery. (Red flag number 5 - What's changed in the last 2/3 months? Nothing. He looked at the exact same CT scan.)

So I told him that I wanted to wait, and left it at that. I immediately began calling other places outside of the our network to get a second opinion. The only place I had any luck with was UT Medical Group in Memphis, Tennessee. They host a monthly craniofacial clinic that is free for families. A group of doctors give free consults for these little patients. I was so thrilled to have found this! Memphis was only a 3 or 4 hour drive, so we did it gladly. The panel of 5 doctors looked at Christian's CT scans, gave him an exam, and asked lots of questions. They all agreed that Christian does NOT have craniosynotosis. They also told me that they know the doctor we were seeing, and they disagreed with the diagnosis. Regardless, there was no way they would allow Christian to undergo craniosynotosis surgery, and I was not about to let him either!

I was so so so relieved! I came out of that office dancing, literally! I called everyone who cared to let them know! When we brought that information back to Christian's doctor, he refused to back down off of his diagnosis, or even pull in another doctor for an opinion, and so we were back where we started.

Have I mentioned yet why this surgery is such a big deal? The surgery involves making an incision from one ear to the other, opening up the skull, moving it to where it should be and reattaching it with metal screws and wires, some of which will dissolve, and some that will stay in the skull for the remainder of the person's life. Around 8 hours in surgery, and up to a week or more in the hospital. This is serious. You may know Delilah, one of Christian's partners in crime from Facebook. She has undergone craniosynotosis, and so has her mom. And they will also tell you, it's no joke.

Yeah. This was a big deal. So there I was. Stuck. Do I go ahead and let him have the surgery even though I'm not sure, and risk having him undergo it unnecessarily, or do I hold off and risk him actually having it and causing brain damage? I was sick for months trying to make this decision. In the meantime, I didn't go back to Christian's doctor. I didn't really have a plan, but I knew that for the moment, I couldn't take Christian back there.

So I say all that to say that I was actively looking for a hospital to take Christian to for his surgeries.

Amazingly, an opportunity came open that we could NOT pass up. A wonderful lady by the name of Julie Thomas called me one evening and began telling me about the amazing children's hospital in her backyard in Columbus, Ohio. Over the course of a few phone conversations, Julie asked if we would be willing to come to Nationwide Children's Hospital (NCH) for some consults. I was thrilled at the opportunity in itself, but it gets better. Julie worked her tail off to get us plane tickets, paid for. She offered us her entire upstairs of her home to stay at during our visit, so that saved us hotel fees. She drove us all over creation, well all over Ohio anyways, during our stay, so we didn't have to rent a car. And there's more! She helped us file paperwork with the hospital to get financial help with the consult fees at NCH. And there's still more! Julie and her co-workers raised enough money PLUS got a foundation to match their fundraiser, to pay for whatever the hospital didn't take off of our bill. Did I mention that Julie is AWESOME!!!!

So we flew into Ohio on a Saturday afternoon. We were met at the airport by a welcoming crew, complete with cheering and signage that read "Christian's crew!" We were then escorted to a restaurant called Bucca de Beppo, where we ate waaaaaay to much, and got acquainted with many of the people who had been so involved in getting us to Ohio. Lunch was great, and then we went back to Julie's house to relax after the flight. Christian made himself right at home with Julie's 15 month old son, Jax, and all his fun toys! They would both get on riding toys and ride all around the living room, giggling and playing their hearts out.

This was dessert at Bucca de Beppo. Oh wait, I was suppose to share with the table? Whoops!

On Sunday, we visited Julie's church, which was our first experience at a Catholic church. During one part of the service, I had missed what was being said (Probably because Christian was yelling in my ear). Everyone stood and started shaking hands. (This is also done at my church, known as fellowship time, where you just greet each other.) But apparently, we were suppose to be saying "Peace be with you" to each other. So someone stuck out a hand to me, and sure enough, I grabbed it and said "How are you?" She gave me an odd look and said "Peace be with you." Whoops! haha!

Sunday was also a leisure day. Julie trusted us with her Cadillac and let us drive to the Tuttle mall. Chris and I shopped for a while, but it was so crowded that we mostly just dodged people with the stroller! I did find Christian an awesome Superman shirt, complete with cape, at Baby Gap. Julie also set up time for us to go to one of her co-worker's house to take Christian swimming. They had a beautiful in ground pool that they so graciously opened up to us. Thank you Karen and Wayne! Christian had a blast! He swam until he just gave out! We spent the rest of that day relaxing at home.

Having fun at the Tuttle mall

Monday was our first appointment day. We went to NCH and saw neurosurgery, urology, and genetics that day. Genetics didn't have to do any new genetic testing, but looked at the workups our children's hospital had done when C was born. The lady we spoke with was older, and I say that only to emphasis that she was so so smart and you could tell she spoke from experience! She really knew her stuff. She gave us our first ever real diagnosis for what actually caused Christian's birth defect. Christian's genetic testing is clean, so she explained that she was very confident that Christian's condition was caused by Amniotic Band Syndrome. You can Google that if you want, but I will tell you the only important thing about that: Our chances of having another child with amniotic band syndrome are slim to none! That was a huge relief to us! After 18 months, it was so nice to finally have a diagnosis!

Urology was a very quick and simple appointment, so I won't go into details about that. Basically, Christian has a very minor hypospadias which will have to be fixed surgically. It will be a very quick and simple procedure,but needs to be done.

Anywho, the big story for Monday: Neurosurgery!!!! This was the appointment that made me nervous because we were getting our 3rd opinion on whether or not Christian has craniosynotosis. This was the tie-breaking decision. I decided if this doctor agreed with Christian's doctor, then I would allow Christian to have the surgery. So we went into this appointment with CT Scans in tow. The doctor was SOOOOO friendly and relatable! He chatted about his kids, he smiled constantly, and even made a few jokes. THAT, my friends, is the type of doctor I want working on my child! The fact that he had kids made me so happy, because I knew he could understand my plight as a parent. So, we got down to business, and I told him the whole history of Christian's craniosynotosis diagnosis. Then I began pointing out sutures in the CT and discussing comparable sutures and head shapes in actual craniosynotosis patients, discussing Christian's head growth chart, and everything I knew to tell him about Christian's diagnosis. His first reaction before answering our question was "What do you do for a living?" I smiled and said "I'm a law student." He laughed and said something to the affect of thinking I was in med school because I knew what I was talking about. He found out quick that this mama bear doesn't play when it comes to my cub! :)

Then he gave us the news! He concluded that Christian DOES NOT have craniosynotosis!! That was the news we'd been praying for!!! As we walked out of that doctors office, happy as we could be, I grabbed a brochure because the front caught my eye. It said "When it's your child, no surgery is routine." It reminded me of the day I took Christian in for his pre-op appointment before his big surgery when he was 3 months old. He was still 2 months old at this time, and the doctor could tell I was stressed. I was asking a lot of questions, and he looked me right in the eye and said "I don't know why you are so stressed out. This is just a simple surgery." I couldn't even believe he said it, but the first words out of my mouth were "He's my 2 month old son! It doesn't matter how simple the surgery is!" (Or something to that affect.)

After that, we made the LONG trek to Cincinnati to check out Shriner's hospital there. We met with Dr. Pan, who we found out very quickly, was a VERY skilled surgeon! He showed us some before and after pictures of another patient he has operated on who had a Tessier cleft. In three surgeries, he had turned that little girl into picture perfect with only 2 small scars!!!! She looked amazing! Our jaws were just hanging while we looked at the photos. We discussed concerns with Dr. Pan and what he thought would be a proper way to go about closing Christians palate, and repairing his lips.

We left there feeling great as well. Shriner's was full of friendly faces and people who doted all over Christian. We made it home in time to order some take out and go to bed that night! We were all exhausted! And Julie was probably the most worn out because she drove the whole way there and back!!!

Tuesday was also full of appointments. Although I don't think any of us were adequately rested, we got up and got ready to meet with Nationwide Children's Craniofacial team! We were so excited for this appointment because craniofacial will be the majority of the Christian's surgeries in his life time. We sat in an exam room, and had several groups come to us to take a look at Christian. He had a dental exam, and a few Ohio State students came to look at his pearly whites, too. When the craniofacial doctors came in, we started asking questions and doing all that normal stuff. They examined Christian and I was so impressed! They were so gentle with him when they were moving his head around, never being forceful. They talked to him and to us with so much respect, and told us that they didn't want to give us any answers just yet. They took some pictures of C, and took his CT Scans, and asked if we could give them some time to come up with a plan of care because Christian's case is so unique. We are more than happy to oblige.We left that day feeling great as well. We were very impressed with the craniofacial team and couldn't wait to hear what they had to say!

Skyline Chili! Had to try it!

We spent Tuesday evening eating a home cooked (and delicious) meal with one of Julie's many amazing co-workers! Melanie and her girls brought us dinner just because they are SOOOO sweet! (Melanie's husband was sick and stayed home.) We passed out early that night as well, still trying to recoup from the day before!

When Wednesday rolled around, it was the day we were heading home. We got up early and made a quick stop to the hospital's dental hygiene clinic to get Christian's teeth brushed. Then, we hopped on over to a fire station where a sweet lady's husband happened to work. Sonya had sent me a message a few days prior inviting us to the fire house for a visit, so we took Christian over to explore the fire house and have some pictures taken with them! Boy, is he ever a little boy! He LOVED the fire trucks! He stood on the front bumper and held onto the grill, feeling all over the front of the fire truck. Chris took him inside the cab and let him play with the steering wheel. They cranked the horn a few times, the second one was a little loud and scared him. :) But man did he have fun! He even got a little fire hat that he worn during our visit!

We also took Christian to the Columbus zoo. This wasn't in our original plans because we thought "We're not taking our blind child to a zoo full of animals he can't look at." Right? But Sonya gave us tickets! So we did some research and found out that they had a sting ray exhibit where you could pet the sting rays! So we were game! Christian LOVED petting the sting rays. I was terrified and kept jerking his hand out of the water when a big one would swim by! They would get close to him and splash that salt water in his face, and Christian would just smile! He didn't care at all! And when we finally got done, he tried licking the salt off of his hands! YUCK!
Here's the link to the video of Christian petting the sting rays! http://www.youtube.com/watch?v=rkqNnlLa6cc

We went straight from the zoo to the airport that day and said some tearful goodbyes to our family away from home! Jax was passed out so he didn't mind seeing us leave, but Julie and I were both sad! We definitely left a piece of our hearts in Columbus that day! And although I hate the circumstances that will bring us back, I will be so excited to see everyone!

So now we are waiting. The doctors called us back about a week later and told us that they were diligently working on a plan for Christian, but because his case is so unique, they wanted to call in some other professionals. Specifically, they called an associate and friend from California who has been treating severe clefts for many years (in fact, they said he's about to retire) to get his opinion. They sent the doctor photos and CT Scans to get his opinion as well. I was SOOOOO impressed with that (as it was the total opposite of what we had experienced prior where 1 doctor wouldn't even pull in another specialist in a different field if the need arose). After another week or so, they called us back and gave us a detailed plan to finish Christian's lip repair. I won't go into very specific detail here, but their plan was amazing, and they are confident that they can be finished in two surgeries, PLUS get his soft palate closed as well. Of course, he will need more surgery to close his hard palate, and later down the road, they will want to go back in and put bone in place where it is missing, but for now, this is what they are talking about doing.

So we are waiting to hear from the surgery scheduling people, and the financial department. They filed our bills with Christian's insurance, so we will find out if they are going to cover any of the costs. We also applied for financial assistance to see if they would knock some of the bill off based on our income. We haven't heard back from either yet. I am ready and eager to hear from them because I want to get these surgeries done, but at the same time, in some way, I am not in a hurry because I am pretty scared of surgery!

When more information is available I will be sure to share it with you guys, but for now, that's our trip to Ohio and the great things that came out of it!!! Hope you all enjoy! And thank you Julie and her family, Melanie and her family, and all the amazing people we met while in Ohio! O-H!!!!

He is so lucky to have a mommy that never stops fighting for him. It sounds like you have found some good doctors in Ohio. Thank you for the update...I know there are alot of us that feel like your family is part of ours. I really love seeing all of Christian's pictures. He is just adorable!!

I love the passion u put into being a mother, such an inspiration. I too am from Ohio and my sister was born with some facial problems that required her to have a total of 12 facial reconstructive surgeries done in Columbus at the same hospitals. I can now tell u she has minimal scaring now at 27, and has became a beautiful new mother this year along with her husband of 7 years. This is so significant to her because as I child I remember fighting several of my own friends for making fun of the way my sister looked. She would cry and say "I wish I could be as beautiful as you are". Always broke my heart, because to me, she was always beautiful. I'm so thankful doctors were able to make her feel more beautiful and for her to find a companion as she never thought would happen. Never give up on doing what you are. Yes he may live a happy, healthy life the way he is but I'm here to say, things can get so much better with the help from this hospital. You have chosen a wonderful place to bring little Christian to and I hope to run into you sometime while your visiting Ohio again. And one more thing.... I-O!!!!!!!!

Thank you for sharing your story and for showing over and over again God's goodness. You are a wonderful reminder and example of God's love and care for us. Thank you for allowing Him to use you and for being willing to share with all of us! As a mom of 4, my heart is touched by the things you have shared.From one mama bear to another :)

I am up doing breathing machine but see all the love you have in ohio wish they knew dr goodall at grandview.miracle man but i know you have the best in town and only have prayers to the future for my friend. Someday,somehow i will met that little miracle cause everytime i see him i fell do much closer to you all ..so much love in your family its contagious .YOU are a wonderful and strong mama bear so i am not worried . YOU stay safe an close and keep me in touch ya hear ?? an anything i am here just 1 hour away when you get in ohio i be there let me know when .. hugs mmsmm xooo

Lacey, Thank you for sharing. This good news brought tears to my eyes! I am so happy for you all. Thank You Jesus!! I will continue to pray for precious Christian & his amazing family! May God Bless~ Kristin

Dear Lacey, thank you for posting all the story. In every step you made, you were lead by God's grace and this is so great! C deserves the best :))) I had a dream last night with C, as he was my baby boy and I couldn't stop kissing his cheeks :D what a blessing he is! Go on and never give up :)) hugs and kisses for you and C

Such wonderful, happy news! You are an amazing family, and it sounds like you have many earthly angels ready to help you. I am stunned by the incompetency of Vanderbilt--not because I've ever been there--but because these decisions you have to make on the part of your child are so, so complicated and SERIOUS. I REALLY hope that those doctors receive disciplinary action for their unbelievably callous and clearly unprofessional behavior. Kudos to you, Lacey, for keeping your faith as well as your mommy's intuition. I SO LOVE reading about Christian and his successes. Thanks for sharing!

Thank you for sharing your story! So glad that you guys are finding the care that he needs! We take Cordell to Cincinnati Children's and he has had all of his cranialfacial surgeries performed there, actually Dr.Pan was in the OR when Cordell's midface surgery was done on the 10th. Excellent doctors! We were out of the hospital in less than a weeks time and he is recovering really well. You are right no surgery no matter how small is ever a little thing.

I am so proud of you, for your love, for your deep motherly instinct and for all the efforts you are making to give Christian simply the best! He so deserves it! The excellent news you received must have been such a relief! I am so sad that you had to go through all of this with scary and wrong diagnoses.. And I am so glad that you found such amazing doctors which were so human, professional and humble enough to discuss their views with their peers instead of pretending to held all the knowledge in the world. I love that they were so respectful and attentive to Christian. Children remember these things very well and this helps a lot in allowing them to have a good relationship with hospitals and doctors. Thanks also to Julie, her family, friends and co-workers for all they did to make your stay a wonderful experience. I loved when you described how Christian and Jax played together giggling and riding..such a tender image. Love also the pictures (particularly the one where he's touching the fire truck) and the video where he gently pets the string rays. It must have been an experience for him to feel their wet and smooth skin. Look forward now to hear about the follow up and I will pray that you hear soon good news from the financial departments. Lots of love and a big kiss to adorable C <3

Ho! just saw your page on face book! That Crainosynotosis surgery sounds like something I had done to my knee 3 weeks ago...cutting open my knee, and shift stuff back to where it is supposed to go and screwing it all together....but this is a blog about Christian not me....so....I just wanted to send some prayers your way and say that just this one blog entry has restored my faith in mankind....I mean total strangers opening their house to you and fund raising to bring you to another state to give Christian the best opportunities possible! The Lord is on your side!

Thank you for sharing your stories with all of us!! I love seeing your family on Facebook too. We live in Cincinnati and my son went to Shriner's for a second degree burn on his hand when he was about 17 months old. He is the same age as Christian, only my son was born in July. Anywho, I love the staff there and I'm so happy they were so good with you. Thank you so much for being great parents to Christian too. You never take any decisions lightly and that takes a lot of hard work. God gave you Christian because he knew you would take the best care of him. God bless!!

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About Me

I am a Christian, mother, wife, daughter, aunt, sister, and friend to some amazing people. I am a student at Nashville School of Law. I work at a daycare. I am passionate about disability advocacy and education.